Status Update

Thank you for checking out the blog. This seems like the best way to keep everyone up to speed with Nash.

Here's a quick recap:

• Nash was born on 7/14 at Cedar Park Regional Medical Center. He weighed 7lb 2oz and his vital signs were great. The nurses immediately took note of a small spot on Nash's face (like an ulcer or a lesion); the pediatrician did not know what to think about it so she took some photos and sent them over to the NICU at Dell Children's Hospital in Austin. The neonatologist at Dell didn't know what it was either, and had Nash sent over to Dell that night.
• A biopsy of Nash's skin on 7/15 revealed that Nash has Langerhans cell Hystiocytosis (LCH). LCH is rare and not very well understood. Certain cells in the immune system are multiplying and forming lesions or masses. Sometimes it is isolated to one system (skin, bones, liver, spleen, etc.). Sometimes it is present in multiple systems. It goes away on its own in some cases; often, treatment is necessary.
• Nash was released from the NICU on 7/19 after a skeletal survey, abdominal ultrasound, and perhaps other tests that I don't recall did not detect LCH anywhere else in Nash's body.
• We followed up with Nash's specialist, a pediatric hematologist/oncologist, on 7/28. The plan at that time was to watch the spot on Nash's face; as long as it did not grow or present in another part of Nash's skin (or elsewhere in his body), we were going to just wait and see if the disease would resolve on its own, which is fairly common with skin-only LCH in infants. 
• On 7/29, the oncologist called to tell us that Nash's bloodwork revealed an abnormally high figure for one of his liver enzymes, which he thought to be sufficient evidence that the disease is present in Nash's liver. He sent us back to Dell to repeat the bloodwork, run an MRI, and insert a long-term IV catheter in order to administer treatment (a low-grade chemotherapy).
• The doctor decided on 7/31 that, upon further reflection, he did not want to begin treatment immediately. There could be other explanations for the results of Nash's bloodwork, and the enzymes were not too far outside of the range of normal counts, so for now we are going to wait and repeat the bloodwork in a week. Nash's MRI (performed on 8/1) was normal -- no visible evidence of liver disease.

So here we are. Nash is home and we are enjoying him to the fullest. He will see the doctor on Monday (8/8) for bloodwork; if his numbers get worse, the doctor will send us back to Dell for a liver biopsy, which should be (I think) conclusive of LCH involvement. Liver disease would move Nash far across the spectrum, from "low-risk" single-system LCH, to "high-risk" multi-system LCH.

We are praying for Nash and invite you to join us. We pray that he does not have liver disease, and that if he does have liver disease, that he would respond to treatment and be healed. Please pray that Chelsi and I would continue to trust God in all circumstances.

If you are reading this, it's probably because you know us, or you know somebody who knows us. In any event, Chelsi and I are thankful for you and appreciate your concern for our baby.